July 29th/30th – Day 19/20

Hot and bothered. Very little change if any. Today I have a PET and CAT scan to investigate further. Only clear fluids from now until appointment at 2.30. It says to allow up to 4 hours for the whole procedure. Oh well let’s hope they find something they can then treat.

That’s as much as I can manage today.

Deborah x

Just when you think everything is going OK….

….I go and get a temperature and end up at the Lister Hospital in Stevenage.

image

I must admit I did feel very poorly. In the morning I had experienced a rough time in the toileting department but I was still determined to put on the planned lunch for my youngest daughter and her relatively new boyfriend. (This being only the second time we have met him). Colin went to great efforts to put on a lovely spread but not much was eaten sadly. Never mind there will be plenty for today. At least Colin, Pollyanna, Jem and Elliot enjoyed it.

I was so disappointed to find myself stuck in hospital again especially when I was so looking forward to some time at home before my transplant when I am likely to be in hospital for three weeks or more.

The problem with Myeloma is that it is so difficult to plan for anything. This morning I was really looking forward to having some friends over for coffee but that has now had to be cancelled.

It isn’t easy but I am having to put my visualisation skills to the test. I am imaging getting through the transplant and enjoying some great times ahead. I am looking forward to spending more time sitting out in the garden in the sunshine and going away for trips in our motor home.

Toby, my brother, kindly sent me this song and video and I think it’s just perfect, so I will spend quite a bit of time watching this over the next few days.

http://youtu.be/Z_aH1z8f6Hk

Fingers crossed I have managed to persuade the doctor to let me home today on oral anti biotics!

Deborah x

Ps. I was pleased to see the 6 C’s displayed in my room in the casualty department.

 

Back on the roller coast ride

You don’t get to choose the ride in my Myeloma theme park you just get ushered into one queue or another depending on your bodies behaviour.

Unfortunately although the new trial drug Carfilzomib, part of the MUK5 trial, seemed to get my para proteins down to an undetectable trace it hasn’t stopped the soft tissue growth happening around my spine. This has continued to increase in size resulting in me being pointed towards another ride in my journey with this horrible cancer.

The plan now is for me to have a week or so’s radiation on this growth to reduce it in size before commencing on a new type of chemo and then progressing to the stem cell transplant. I knew this was always on the cards but it is happening a bit faster than I had anticipated.

Once again any planning goes out of the window and I have to follow the route set out for me. Hey Ho we will go with the flow and take each step as it comes.

I can’t fault the nursing care and the time both the doctors and nurses have spent explaining everything very carefully to me, listening and answering all my questions and doing all they can to make me feel as comfortable as possible.

It was great to have my sister by my side yesterday her support and kindness makes so much difference. In between the tears we could laugh together at the impromptu art class we suddenly found ourselves at or the men popping up at the window of my 13th floor room.

image

It looks like I may be hospital certainly until Monday but perhaps for the whole week following that. If a I get lucky I will get moved to the Cotton Rooms which is the hospitals own 4* hotel. We will just have to wait and see. Last night Colin came up and slept soundly in the reclining chair next to my bed. My sleep was better although I am on the high dose of 40mg of steroids now for the next few days. The pain is being better controlled and the nausea is all but gone thank goodness.

This morning I have another MRI scan which I will be well dosed up on pain killers for as I shall be having to lie on my back for a good 40 minutes or so. Being in one of those tunnels isn’t easy at the best of times and it’s not made any easier by the regular hot flushes never mind the back pain. The afternoon will be spent on the ground floor planning with the radiation team. I will apparently get my first tattoo’s (beating my nephew Charles to it!) you get free tattoo’s in his theme park but I don’t suppose I get to choose the design. I think I just get four dots that tell the machines precisely where to aim there laser beams.
Who knows what else will happen today. I may pop out for a candy floss or play a game of Pluck the Duck and win 25p.

Talking about winning my prize of the variety case of 12 bottles of wine arrived yesterday. So we have a bit of a wine tasting party to look forward to. Who’s up for that?

image

I hope you have a Good Friday and if you are going to a theme park it’s by your choice only.
If not and you are one of the unlucky ones to be in the Myeloma park good luck to you all I hope you are having a smooth gentle ride today.

Deborah x

We’re on a roll…

Yesterday was an exciting day, not only did we receive our first 250 copies of the BrainBox manual but my Ebook version of Sticking Plasters for Children’s Souls became available for purchase on Amazon. If you do purchase a copy don’t forget to leave your comments please.

http://www.amazon.co.uk/Sticking-Plasters-Childrens-Souls-Emotional-ebook/dp/B00IRFE9SY/ref=sr_1_1?ie=UTF8&qid=1393914881&sr=8-1&keywords=Sticking+plasters+for+children%27s+souls

image

We also added a paypal button to our BrainBox website so can start putting your orders in
http://thebrainbox.org.uk
The rest of the bits and pieces to complete the packs arrive on Thursday so we can start packing up and posting out on Friday. This has been a long time coming and many years hard work but knowing the difference it can make it has been worth every moment.
image

Now we have a new website to design, more booklets to finish off and I shall then get on with producing my ‘Get Control of Anger’ four week program.

So much to do but it is all very enjoyable and takes the focus off my current health issues.

Have a good day

Deborah x

Do you have a choice?

Last night I got thinking, always a dangerous thing especially when one has taken an extremely high dose of steroids, so I blame the drugs!

Many people I have spoken to recently, have told me about their lack of choices. How they feel trapped by their lifestyles. They appear to have painted themselves into a corner (imagine literally doing that) and there seems to be no way out.

So there they stand stuck, rooted to the spot with little or nowhere to move. What would you do if that were you? Stuck among a sea of wet sticky gloss paint with only a paintbrush in your hand. Could you work your way out?

image

I challenge you to think of a way. Perhaps you would need to just walk through it and get your feet wet? But think of the consequences to those glossy footprints spread around, others noticing the mess.

You get out but where do you go next? Now you have an un-painted corner, do you go back and finish it off when everything has dried out? Have you ever done this?  Was it as bad as you thought it might have been?

Perhaps, just perhaps it reveals something new. Maybe it exposes your ability to move on and become unstuck.  You might then have the power of knowledge that, it is, possible?

Hmm you see I have been thinking.

I really do appreciate my life and for that I am very grateful. Dare I say, that even includes my unstable health predicament. At this moment in time I really couldn’t be much happier, the only icing on the cake would be a cure for all cancers and I believe we are very close to reaching  that point.

Having cancer has shown me so much. I have learnt how much I am loved and that feels good. I have found true friendships, become even closer to my family and had my eyes open to the wealth of human spirit and generosity around me.

I must admit though a few weeks before Christmas, at a time when I was in remission and physically almost recovered from the last rounds of treatment, I was at my lowest point. I was clinically depressed. I couldn’t talk about it, there didn’t seem much point in that or anything else much. On the outside I bumbled along but inside I was flat, unmotivated. I started to shut the world out, you may have noticed my lack of blogs. Perhaps you thought this was a good sign? That I was getting on with enjoying life at a time I was physically able to do so. Planning a holiday abroad and organising a family Christmas. The worse of all I felt ashamed, I am or was Deborah Bone expert Mental Health Practitioner. I had the answers for good mental well being, but here I was locked in the dark hole and thinking that there really wasn’t a way out. I lost one of the things dearest to me, no longer able to practice as a qualified nurse, my identity had changed. No longer was I Deborah Bone, the Mental Health Nurse, I become Deborah Bone, you know the one with Cancer. Luckily for me I am no longer in that place. So what pulled me out and sent the black dog scarpering? I need a bit more time to think about that one so I will save it for another time. You lucky readers!

Back to choices. Having being diagnosed with what is described by some medics as a terminal illness (I know otherwise.) my choices seemed to be slipping away. My life has changed dramatically, but looking back I can’t say it’s all been so bad and at this moment in time life feels pretty good. I am doing I job I love again, working with my husband in a beautiful home surrounded by family who love me and true friends. I have enough money to buy fresh wholesome food and the time to prepare and cook it. I can stop in the day to visit a spa, have friends round for lunch, sit in my PJ’s and watch TV. I can decide to pick up my paints or make jewellery, I can take the dog out for fresh air, spend whole days with my grandson, infact do pretty much anything my heart desires. I consider that fairly lucky, don’t you?

So what stops you having some of this dream of a lifestyle?

Maybe you don’t have the same dreams for a start.

But so many times I hear people say that they have no choice. They have painted themselves into that corner and cannot see a way out, at least not without making a big mess of things. If you are one of these people just think for a moment if you did find a way what would it be like for you?

If your dream life were to start tomorrow morning, what would you be doing. Are many of you stuck already. I can almost hear some of you thinking, I would need to win the lottery. Now you are stuck because that bit is out of your control! What would the money bring you that you couldn’t find in another way?

I know the most lovely sensitive, kind charming guy. He represents lots of other people I have spoken to professionally and privately. He feels stuck in his corner. It’s not all bad in there he can temporarily swing from the chandelier now and again, but it always seems to end up with him falling back into that corner. I wonder what it would be like for him if one day he just walked through that wet paint and entered a different room on the other side. No painted floors, a blank canvas just waiting for that first brush stroke? A blank first page on the novel “My New Life” or the “The Day I got My Feet Wet”.image

Perhaps you will discover a new skill, make new connections, more money than ever before or realise you gain that most precious gift of all time. I can feel another book coming on.

In my story, my guy uses his talents and love for cooking to set up his own company catering for the rich and famous. Whist swinging from the chandelier he took a holiday to Italy and learnt from the great master chefs. He learnt how to source the finest ingredients and from a Sommelier about the perfect wines to accompany each corse. He became well known in his circle of old colleagues and new and old friends, and was in high demand. He learnt so much and taught so much to so many. He took control and it wasn’t nearly as messy as he feared it would be. He is the hero in my book which is going to become a best seller. All the proceeds are going to go back to my main character who inspired the book in the first place, but somehow I don’t think he will be needing it.

Call me a dreamer, I can take such a title and wear it with pride. If you don’t have a dream, how you going to have a dream come true. Oh dear, I feel a Miranda moment coming on and that will wake Colin up! I had better move on before I just can’t help myself.

image

Today I am off for a trim at the Cancer hair place and then out for lunch with a good friend. I can do that sort of thing now, I may even get my nails painted again. I will then get home and carry on with my most enjoyable work project.

If you find yourself stuck in any corners just dare to spend a few of your precious moments today thinking about taking another swing on that chandelier and imaging a house full of other blank walls just waiting for you.

Have a good day if your not too exhausted from reading all of the above.

Deborah xxx

A two in three chance.

These are the odds for me getting a relatively new drug yet to be licensed in Europe. The advantage of Carfilzomib over Velcade is that I am less likely to get the painful neuropathic side effects. To find out more about the benefits of this drug follow the link below, go to clinical trials and novel treatments and the top short film is all about Carfilzomib.

www.myelomatv.org.uk

The computer will pick the name out of the hat so I shall just have to hope the roulette wheel works in my favour. If I don’t take part in the trial I have no chance at all of receiving it, so I am fortunate to even be considered. I have a consultant appointment on Thursday morning followed by an MRI scan at 6pm so there will be quite a lot of hanging about  the hospital but they have a good download speed there so I am sure our iPads will come in useful.. They did offer me a bone biopsy on Friday but being my birthday I chose to postpone that joy until the following Monday. Apparently treatment is likely to follow the following week. It will mean travelling into London twice a week but the days are dependent on which drug I end up with. And this weeks lucky winner is….. I am visualising that Carfilzomib ticket being pulled out to a round of applause.

Yesterday was a better day emotionally as I was able to spend some time on the children’s mental health leaflets Colin and I are designing together. The content is pretty easy to pull together but designing the look of the booklet is a creative but enjoyable challenge. We are trying to learn a new package called Adobe Indesign which, once we have got the hang of the basics, will set us up on the way to produce even more leaflets etc. hopefully enabling us to earn a few more pounds in the future.

Today I am grateful for the NHS and the excellent support I get from UCLH
And one of the many things I am looking forward to today is spending some more time working alongside my loving husband.

Recently I  came across this excellent article which reminded me of my own Pollyanna who was named after the little girl in the film and has certainly lived up to her name.

“A New Look at the Value of Pollyanna’s Optimism! by Kate Nasser, The People Skills Coach(TM)

Over the years several leaders hhttp://katenasser.com/leadership-choose-positive-people-skills/ave told me that they would not promote someone who had a Pollyanna attitude. It was one of those leadership labels that spoke volumes. Their disdain was clear. They were describing optimism as unrealistic and naive.

Because leadership today focuses on positive thinking, I decided to watch the movie Pollyanna to see how this supposedly optimistic label earned such disdain.

I expected Pollyanna to be a foolish character that was out of touch with reality. I pictured being bored and reaching for the stop button.

Instead I saw a passionate change agent who spoke up to people regardless of their age, position. and disposition. Pollyanna was very much in touch with reality!”

You can read more on Kate’s great blog and find out more about her people skills twitter chats etc by touching the link below.  We have so much at our fingertips nowadays and it always amazes me just how much we can learn and share ideas with each other wherever we are in the world.

http://katenasser.com/leadership-choose-positive-people-skills/

Another amazing Kate is of course my lovely sister. Katie as she is known with her business hat on, together with her friend and business partner Anna, have set up a programme that will help you change the way you think about food, resulting in changes to your physical form and energy levels. More than just another healthy eating program The 15 minutes programme provides you with ongoing coaching and support to enable you to make the changes you desire and most importantly, sustain them. It has already run a successful pilot with great reviews. You could learn more from Katie, Anna and some of their previous clients on January 11th when they will be giving a talk at the Letchworth Arts Centre.  just follow the link below to find out more.

http://www.the15mins.com/

If you are looking for a way to make changes that will last, instead of embarking on another Yo-Yo diet or counting yet more calories I can promise you won’t be disappointed.

Now to get on with another days work whilst my health allows but not before a quick catch up on last nights TV.

Have a great day and I hope it isn’t too wet and cold wherever you are.

Deborah x

Back to the BrainBox

I am having one of my early morning thoughts once again, perhaps this is a good sign as it reminds me of the old days pre myeloma.

A few days ago I watched another television programme on Obssessional Compulsive Disorder (OCD). This time the programme came from an internationally renowned treatment centre dealing with severe, complex and resistant OCD, based in London. On there was a young computer programmer with severe symptoms related to contamination. After weeks of intense therapy his improvement was evident but I couldn’t help wishing that I could have had the opportunity to share the BrainBox with him and the other patients on the unit. It seems such a missed opportunity to have this resource and for it not to be more widely available as I know the difference it can make. (See Feb 2nd post)

So I have been awake thinking since 3.30am about what else I can do about it. The conclusion I have come up with so far is to make a YouTube video of me demonstrating the resource. This may be enough to help lots of people out there understand more about how their brains work and to help them with a range of often very disabling symptoms.

Let me just recap what the BrainBox does.

Using recycled computer components it demonstrates how three different parts of the brain work.
1) the basic operating system represented by the motherboard
2) the emotional brain or Limbic system represented by the hard disc drive
3) the clever thinking part of the brain or the neocortex represented by the intel processor.

These three parts of the brain are linked together by neuro pathways represented by wires with crocodile clips on the end that can join the three parts together.

Once joined together information is flowing freely between the different parts of the BrainBox or brain.

Now bear in mind that the main job of the brain is too keep us alive. It is in charge of all other parts of the body. It is in the control seat.

We know from brain scans that information enters the brain through the emotional part (hard disc drive). This is extremely sensitive and designed to detect anything that the brain perceives as danger. If it does detect anything IT (rather than you) perceives is dangerous it can disconnect from the thinking part of the brain and immediately send messages to the basic operating system to get you out of that dangerous situation. At this moment in time we do not need our thinking brain to be in gear we just need to respond. The operating system will send chemical messages to the important parts of the body required for our survival. It will speed up our heart rate, increase our breathing and provide us with the adrenaline to run or fight. This is often referred to as the fight or flight response. Just imagine for a moment a lion came into the room or a tree was falling. This is not the time to be thinking about the sex of the lion or it’s country of origin. We don’t need to know about the type of tree falling, we just need to very quickly get out of the way or stand up and fight. Not that I recommend fighting with a lion or a tree for that matter.

Where things go wrong is when the brain is too sensitive, a bit like a car alarm going off when the wind blows. Severe anxiety or anger, times of heightened emotional arousal, will start this process off, disabling our thinking part of the brain and rendering us temporarily stupid. Luckily we can’t stay in this state for too long, as the brain knows this itself would be detrimental to our health.

I believe those suffering with OCD, among others, have exceptional brains that are just working too hard. At some point (which may be or may not be known ), the brain will have decided that a particular action, stimuli, external or internal thought is of severe danger. Often the sufferer, with the thinking part of the brain attached, will be able to understand how irrational this may be but the brain has been programmed so well into its own perception of danger that it will disconnect from that thinking making the person do whatever he or she needs to de to remain safe.

I believe once a greater understanding of this is achieved, and the BrainBox provides an excellent visual and kinaesthetic metaphor for this, then progress can be made very quickly.
Various strategies can be used to quickly reconnect the thinking part of the brain including breathing and visualisation techniques.

Can you think of any times when your thinking brain has disconnected? Perhaps you have become very angry and said things that later (when reconnected) you’ve regretted? Perhaps you have been anxious before an exam or job interview and your mind seems to have gone blank? All this is perfectly normal. Your brain has just detected something which it has perceived as being dangerous and done something about it. This might have included making you feel physically sick or unwell to get you out of the situation.

Sometimes the brain has just been wrongly programmed. It has learnt that something is very dangerous or required for its survival. This happens with phobias or addictions.
The BrainBox can help with understanding these programmes, that often cause severe difficulties both physically and mentally. Take smoking for example. Most addicted smokers know the risks but find it very hard to give up. Imagine the brain being so strongly programmed into thinking it needs nicotine for its survival. Your intentions to give up are great but once the nicotine levels in your body start to drop your brains alarm systems go off, you disconnect from your thinking part of the brain and reach out for the fag packet. Once your nicotine levels have risen you thinking brain reconnects and you are left wondering where your resolve to give up disappeared to.
The same thing can be said for sugar or alcohol cravings.

As soon as Colin wakes up I think I will explore how to put all this into a YouTube video. Remembering the starfish story, if I can make a difference to one person than that’s a worthwhile thing to do.

Have a good day

Deborah x

Using the power of visualisation.

photo
Living in our litte house under the dome I am again reminded how lucky we are to live in the house of our dreams, remembering well the days we spent visualising such a perfect home. Ok we don’t own it and the heating bills can be a bit steep but its our little place in paradise. I have also managed to visualise those annoying cancer rats into impotency as they fail to reproduce and cancer stays at bay. Meanwhile some very clever person or persons are sitting at home right now working out how to permanently castrate them. Could it be Jack, who by the age of 15 has already developed a test to early identify pancreatic cancer saving thousands of lives?
http://www.cbsnews.com/8301-18560_162-57606995/boy-wonder-jack-andraka/

I can clearly see myself finishing my book on children’s mental health and the publishers letter of acceptance. What fun the book launch will be. 🙂

Such good times ahead but for now I shall just prepare for a meal out at an old friends house and thank the universe for being alive.

Deborah x

What a great team…

…we make. First we smash those cancerous cells to smithereens and then we go and grow enough baby cells for at least two transplants. You really can’t ask for more than that. For those of you wondering what happens next, I have an appointment for an echocardiogram and one with the consultant on July 11th. I expect then to bo booked in for another MRI scan and bone biopsy. These are tests that are routinely carried out but are also more important as I am taking part in a clinical trial. They will measure how many cancerous cells are left in my bone marrow and the damage that has been done to my bones. I already have several bone lesions but the consultants for one reason or another have been reluctant to let on where exactly they are. I have been very lucky with my cancer as it was spotted through a routine blood test and prior to me having any symptoms. For many other people the diagnosis is often spotted after a broken bone often in the neck or back.

My stem cells are being put on ice. That is because I am on a trial that will monitor how long it will be before I require a transplant. They reckon from between 18 months and two years, but I am counting on a good ten years before the little blighters start reproducing again. It is for this reason that I will be closely monitored and the reason why, unfortunately that your never without the constant reminder of your disease. It’s not like a cancer where a bit can be chopped off and then you are monitored for a few years and then if all is Ok you are off the hook. Myeloma sticks with you lying dormant like a sleeping dragon waiting to be woken again to breathe its fire. You need to learn to live with myeloma, make it your friend really, and set up some sort of pact. If I don’t poke you, you will leave me alone. Hmm maybe that’s more like an ex partner than a friend!

Oh well apart from the odd appointment to remind me, I want to pretty much forget about the whole thing and start living again. My first task is to ween myself off the enormous amount of drugs I’m taking so that I can enjoy a drink at the party.

Thinking about the party I have a few personal errands to run. Luckily our lovely old motorhome sailed through its MOT so we shall bring her home today and may take her out for a spin. I have been told to take it easy for a couple of days and my cancer co-ordinator said I should allow 3 months post cancer treatments to be back to my normal self. Well they don’t know me very well. I have just about had as much as I can stand of all of this sitting around. However I will take it easy for a day or two, I don’t want to rupture my groin!

Thank you for all your messages of support. When I talk about this having being a team effort, I mean this in all sincerity. Those of you who have provided support in the way of just reading the blog and letting me know you were on the same team helped immensely. The brain and the body are intricately connected and positivity of thought is very necessary. That is not to take away from the amazing skills of the medical teams playing their part in my recovery and present remission status.

Bless you all

Deborah xxx

Important news…

…yesterday was the first time in the last six months or so, that I positively felt well. To tell the truth, I had forgotten what feeling well,actually felt like. It was on January 7th of this year that I received the call that turned my life upside down. Somewhat hesitantly, I was crawling towards my 50th birthday in a smouldering sort of fashion. However three days prior to my birthday, everything in my world started burning fierce fully as my latest blood results confirmed a diagnosis of Mutliple Myeloma. Instead of returning to the job I loved after the Christmas break, I was catapulted into a full time regime of hospital appointments. The bone biopsy that recorded the 80-90% cancerous cells in my bone marrow, triggered the gun to my own, personal Race for Life. This time, instead of joining my work colleagues in Regents Park, running and collecting money for cancer charities, I was the beneficiary. So just how did that happen? I was the girl who could make dreams come true, the one who focused her intentions on reaching for the sky and got there. Suddenly all my foundations came crumbling down and I found myself crawling among the rubble, scarcely seeing through the tears as the dust finally settled. Bad things happen to strong people, is the way I chose to reframe the catastrophe in front of me. If anyone could cope with this I could, but I must admit there have been days that I have doubted even my strongest beliefs. But here I am ready to rise from the ashes, ready to adorn my rose coloured spectacles with the Pollyannerish attitudes that have paved my path with gold. Welcome back Deborah, I thought I had nearly lost you for a moment there hidden beneath the piles of consent forms and GP letters. Welcome back to the dreamer whose dreams are a tad brighter than they ever were before. Thank you to the universe for showing me the darkness, so that I could recognise the bright lights and not be blinded by the glare. Get ready world because I am coming your way, stronger for the storm you sent to twist and turn furiously until the sunshine began to stream through the clouds of utter despair. My harvesting will reap the fruits of all of our efforts and my party will become the celebration of life.

Brace yourselves.

Today is going to be a good day a very good day !

Thank you for sticking by my side

Deborah xxxxx